Tiredness
Posted , 7 users are following.
Hi everyone well after feeling full of energy for a few weeks today I have got up feeling worn out and my neck and shoulders a bit tender , I have been on 10mg of pred for about 2 weeks now , I have been working a bit extra as my store is closing but I did feel fine whilst at work , I have been sleeping a bit better but I am up before 6 most mornings is it normal to have days like this
best wishes to you all Molly
0 likes, 23 replies
EileenH molly1957
Posted
The full of energy bit might have been due to the pred - now you are at a lower dose and your body is getting used to it that effect may be waning - plus the extra work for the last few days.
molly1957 EileenH
Posted
EileenH molly1957
Posted
You do need to ask for some 1mg tablets to be able to reduce in smaller steps though - it is far too far to go from 15mg to 10mg in PMR even if that is a normal reduction plan for patients on pred for other things. PMR is not other things! If you reduced from 15 to 10 mg just like that 2 weeks ago I'm not surprised you are struggling.
Those of us who don't have to work really admire those of you with PMR who do - I worked and without pred but I was freelance and just had to stagger from bed to desk plus I chose the hours I worked! I'm the best boss I've ever had...
molly1957 EileenH
Posted
EileenH molly1957
Posted
Are you in the UK? Do see your GP and discuss it with him - if he will, he could give you a prescription for 1mg but some won't disagree with a consultant. You have a diagnosis, the GP could manage you from here but it is up to him.
molly1957 EileenH
Posted
EileenH molly1957
Posted
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
and about half way down the first post you will find a heading "Bristol paper"
If you can, print it out and take it to your GP and ask her to read it. Your GP is trying to cop out - she could manage you from the outset if she wanted to and this paper is a guideline for her to help her do that. It is written by rheumies for GPs. They recommend 6 weeks at 15, 6 weeks at 12.5mg and that smaller drop is often critical. We as a patient group have the experience that even that is a bit much, especially for a patient who must work, but it is far better than what your rheumy is intent on.
If you don't have your follow-up appointment already there is no guarantee that it will be that soon - do go and see your GP and be very clear with her how poorly you feel. Your GP is there as a mediator, that is what she is paid for and why she did her training.
molly1957 EileenH
Posted
EileenH molly1957
Posted
molly1957 EileenH
Posted
christine_fay molly1957
Posted
EileenH christine_fay
Posted
However - how very sensible to provide your GP with some solid evidence of his intransigence!
Anhaga molly1957
Posted
molly1957 Anhaga
Posted
penelope10875 Anhaga
Posted
It's the being able to tell yourself 'NO' which counts. If you don't learn that lesson, you will keep having bad days.
Spoons is good!
molly1957 penelope10875
Posted
penelope10875 molly1957
Posted
Anhaga molly1957
Posted
penelope10875 Anhaga
Posted
Good luck
EileenH penelope10875
Posted
Yes - exercise is good but not in the way your did pre-PMR. You must build up slowly to it and if possible avoid the actions that lead to a flare: repeated or sustained movements. You will probably manage to walk around the lawn with the mower always going forward with no obstacles but when you get to one of those difficult bits where you need to push and pull it back and fore to deal with a bit around a tree or in a corner those repeated actions will use the same muscles all the time and they will tire easily.
Training to do any action means using the muscle repeatedly, during which time small tears are created in the muscle which is part of the ache post exercise together with the formation of lactate. Normally that heals quickly, the lactate is removed and the muscle eventually "trains" to be able to do that all faster and better. In PMR that learning process doesn't happen as well, the tears take far far longer to heal and the lactate to be removed. Do the "training" over months rather than weeks and you will be able to manage the same eventually. In people who are highly trained anyway this process does seem to happen faster and they apparently recover quicker or are able to do more.
But sitting and feeling sorry for yourself is one of the worst things you can do - get up and go for a gentle walk, increasing the distance/speed one at a time, same distance faster or longer at the same pace. Walk from one place you can rest to another, rinse and repeat - and you will get far further in bites of 10 minutes than if you try to walk for half an hour at ago. If you can find a warm pool, go to it and even if you can't manage an aqua class, just walk and do pretend weight lifting against the water - it takes 7 times as much effort as on dry land. I did aqua aerobics with PMR for 5 years without pred. I did it at my level, no competing with the others and with time I could do the same as the rest - all discussed with the instructor first. It kept me reasonably mobile, when I had to give it up because we moved somewhere without the same facilities the PMR definitely got worse.
LayneTX EileenH
Posted
maybe gather many of your posts and put in a book
Best regards!
Layne
Anhaga LayneTX
Posted
EileenH LayneTX
Posted
But the book that lodger often speaks about is effectively just that - a compilation of the most important things.